|Year : 2019 | Volume
| Issue : 1 | Page : 17-23
The Changing Face of Lung Cancer: Survivor Perspectives on Patient Engagement
Margaret I Fitch
Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
|Date of Submission||06-Jul-2018|
|Date of Acceptance||20-Jul-2018|
|Date of Web Publication||05-Oct-2018|
Margaret I Fitch
Bloomberg Faculty of Nursing, University of Toronto
Source of Support: None, Conflict of Interest: None
Objective: Advances in the diagnosis and treatment of lung cancer have resulted in an increasing number of individuals living longer following their diagnosis. No longer is lung cancer the “death sentence” it once was. This initiative was designed to document the current experiences of lung cancer patients and explore the potential for patient engagement. Methods: Three avenues of investigation were undertaken: a literature review regarding lung cancer and patient engagement, an environmental scan of lung organizations and cancer societies regarding their approaches to lung cancer patient and family engagement, and in-depth interviews with lung cancer survivors and family members about their experiences and perspectives about patient engagement. Information was collated and major themes identified. Results: Evidence about the experience of lung cancer patients illustrates their needs are complex and dynamic. It also presents a clear picture of unmet physical, psychosocial, and spiritual needs. In particular, stigma is a significant issue for those diagnosed with lung cancer. Information, support, and communication play important roles in helping patients cope but access to resources remains challenging. Patients and family members expressed interest in becoming engaged in advocacy to improve care. Conclusions: The changing face of lung cancer creates the potential for lung cancer survivors to become engaged not only in participating in their own care but also become more involved in peer support and advocacy than lung cancer patients have been able to do in the past.
Keywords: Lung cancer, patient engagement, patient experience
|How to cite this article:|
Fitch MI. The Changing Face of Lung Cancer: Survivor Perspectives on Patient Engagement. Asia Pac J Oncol Nurs 2019;6:17-23
|How to cite this URL:|
Fitch MI. The Changing Face of Lung Cancer: Survivor Perspectives on Patient Engagement. Asia Pac J Oncol Nurs [serial online] 2019 [cited 2018 Dec 15];6:17-23. Available from: http://www.apjon.org/text.asp?2019/6/1/17/242773
| Introduction|| |
The number of individuals diagnosed with lung cancer is expected to double over the next 30 years. Lung cancer accounts for 14% of all new cancers diagnosed and 25% of all cancer deaths. However, the context of lung cancer today is complex and evolving. A number of trends in healthcare are currently influencing the experience of individuals diagnosed with lung cancer and their family members. These trends include:
- Increasing availability of screening approaches for lung cancer (for those at high risk)
- Added complexity of treatment protocols including targeted therapies, and resulting alterations in symptoms and side effects profiles
- Increasing number of older adults, many of whom have comorbidities,
- Decreasing mortality rates (>2% per year in males) and increasing number of survivors (individuals either cured or living longer with controlled disease), and
- Drive toward person-centered care and patient involvement or engagement in healthcare.
This initiative was undertaken to document the experiences of individuals with lung cancer and to better understand the potential for lung cancer survivors and their family members to engage in activities aimed at improving lung cancer care. Relevant patient/caregiver engagement can result in meaningful intervention/program design and implementation.
| Methods|| |
The project consisted of three parts: A literature review, a series of interviews with survivors and caregivers, and an environmental scan.
The literature review was completed to identify recent literature on supportive care needs of lung cancer patients and their families.
Using keywords (e.g., supportive care, patient experience, person-centered care, lung cancer, survivorship) several databases were accessed including Medline, PubMed, and PsychLit to identify literature published in the past 5 years regarding needs of lung cancer patients and caregivers.
Supportive care needs apply to all individuals but vary in nature and intensity from one person to the next and over time. A number of factors influence these needs including life stage, gender, age, and type of disease and treatment.,,,,, In the past, lung cancer patients and their family members have experienced significant levels of unmet supportive care needs.,, Harrison et al. reviewed a series of 94 studies and reported unmet needs in several domains: Physical (7%–89%), psychological (12%–85%), informational (6%–93%), spiritual (14%–51%), sexuality (33%–63%), and activities of daily living (1%–73%). Similarly, Lambert et al. reported unmet needs for caregivers of lung cancer patients following a review of 29 studies: Comprehensive cancer care (1.1%–96%), emotional/psychological (3%–93.2%), impact of activities of daily living (2.8%–79%), relationships (3%–58%), informational (2.2%–86%), and spiritual (2%–43%). With the changing dynamics of the lung cancer experience, the nature of these unmet needs may vary.
The environmental scan was completed to understanding the current approaches to patient and family engagement by lung and other related health facilities and cancer agencies.
A snowball technique was utilized to identify the relevant organizations involved in lung cancer. Websites for these organizations were reviewed to document how patients and families were engaged with each organization.
A trend toward engaging patients and families was clearly identified across healthcare facilities and cancer support organizations. The most frequent approaches involved strategies for engaging individuals in their own direct care decisions. Some organizations have involved patients and families in codesigning programs and delivering educational activities while others had incorporated patients and family members into committees, task forces, and research programs. In the past, relatively few lung cancer survivors have been involved; however, there is a desire to incorporate more as the number of survivors grows.
Interviews with survivors and caregivers
Interviews with lung cancer survivors and caregivers were conducted to gain insight about the experiences with diagnosis, treatment, and follow-up care.
Members of the OLA Health Professional Advisory Committee identified individuals in their respective practices whom they thought would be willing to be interview for this project. Eligibility included living in Ontario, a confirmed diagnosis of lung cancer or a caregiver of an individual with lung cancer. Interested individuals were contacted by the project coordinator who explained the project and obtained consent.
Individuals underwent an in-depth interview on the telephone with the project coordinator, individuals with expertise in qualitative research. The interview guide was designed to elicit the experiences of diagnosis and treatment, challenges experienced, and where improvements could be made. The transcripts of the interviews were subjected to a conventional content analysis where content topics were identified and key messages then isolated for each topic. By comparing the key messages across all participants, emergent themes were crafted. These themes were presented to three groups of patients and clinicians to check clarity, relevance, and validity.
Twelve individuals completed the semi-structured interview. Eight were lung cancer patients/survivors, and four were family members. The sample reflected males (n = 3) and females (n = 9), and a range of ages (25–84 years), employment status (employed, retired), and geographic locations across Ontario (i.e., Toronto, Ottawa, Thunder Bay, Southern Ontario).
The findings from these interviews are reported below with reference to the timeline of the cancer journey– from diagnosis to survivorship. Quotes are in [Table 1] for illustrative purposes.
Being diagnosed with lung cancer
The primary challenges participants experienced in relation to being diagnosed with lung cancer included recognizing symptoms as having a potential for lung cancer, timeliness of testing and receiving test results, the emotional shock of hearing the diagnosis, and being upset by the way the diagnosis was communicated. Individuals had symptoms (e.g., pain in back or hip, coughing) but found it took a lengthy period to undergo tests and receive a definitive diagnosis. Hearing the diagnosis was an emotional event with participants experiencing shock, numbness, panic, and disbelief. This was particularly so for individuals who had never smoked. Participants felt the manner in which the diagnosis was communicated, with so much negativity, added to their burden of distress. Participants indicated the “new” messages about lung cancer ought to be clearly communicated early in the course of the treatment discussion: New treatment approaches have resulted in new hope and the emergence of a “newstory” about the realities of lung cancer.
During the treatment interval participants experienced challenges accessing information for decision-making, dealing with side effects, not being able to engage in usual activities, finding support services, and confronting stigma. Participants found that they needed information to help them understand what was happening and make decisions about the next steps they needed to take. For many, they had little information about the disease, its treatment options, or the eventual prognosis at the time of diagnosis.
Once undergoing treatment, the primary challenges related to symptom and side effect management and finding support for their family members. Fatigue was one of the most common and troublesome side effects, interfering with the ability to engage in usual daily activities (i.e., house and yard work, grocery shopping, and driving). Making the decision to continue working through the time of treatment was a consideration. The new types of treatment allow better symptom management than in the past and facilitate oral administration at home. This means it is possible to continue working. Especially for individuals who are self-employed, or those without insurance coverage, this is clearly important financially.
Finding appropriate avenues to obtain emotional support or information about available services in the community was difficult for a number of participants. The lack of professional counselors, especially in rural settings, was a barrier and the availability of in-person support groups for lung cancer patients or survivors was described as “…woefully lacking”.
Another significant challenge for survivors was facing the stigma of having lung cancer and others thinking they brought it on themselves by smoking. They found that stigma was evident during their interactions with healthcare providers and members of the general public. Individuals who had never smoked found the judgments made by others particularly troublesome.
Surviving lung cancer
Both physical and practical changes continue for individuals with lung cancer following primary cancer treatment. Getting “back to normal” and dealing with late effects of treatment were described. Getting back to normal included adjusting to how the body feels and functions, shifts in relationships with others, and re-engaging in the normal activities of life. For some individuals, the cancer diagnosis stimulated a change in attitudes about life and a refocusing on what was important to them.
The profile of late effects for lung cancer survivors is, in some ways, just beginning to be documented in relation to their impact on quality of life. Fatigue may continue after treatment for varying periods of time. Shifts in the ability to learn and recall information as well as concentration were highlighted. Numbness or tingling in hands and feet for many interfered with balance, walking, and their ability to do usual activities. Moreover, an ever-present psychosocial issue was living with the fear of recurrence. Of note, the individuals taking targeted therapies expressed a delight at how well they were feeling and how much they could do each day.
Living with advanced disease
Those facing advanced disease situations found symptom management and family support were of primary concern. Advancing disease resulted in deteriorating capacity for individuals and an increasing need for physical and practical support in the home. Family members were often the primary caretakers. However, the workload required and the need to balance aspects of the caregiver's own life made for a challenging time.
Access to palliative care expertise and support was cited as a challenge for individuals remaining at home during the last days of life. When a palliative care service or home care was engaged, it was most helpful to patients and family caregivers. However, when this service was not available, or family members did not have information about how to access the service, the family members felt that the symptom management for patients and support for themselves was sorely lacking. This was a particular issue for those living in small towns or rural settings.
| Conclusion|| |
The lung cancer experience is complex and evolving. Lung cancer is not the “death sentence” it once was as significant treatment changes are emerging. It is important to understand how these changes are experienced by individuals diagnosed with the disease if appropriate support is to be made available to them. Clearly timely diagnosis, access to information, access to support, and access to palliative care remain areas of unmet need. However, as more individuals join the ranks of survivors, more attention needs to be paid to their unique needs related to stigma, fear of recurrence, and management of late effects of treatment. Finally, of particular note, is the growing cadre of individuals who have been diagnosed with lung cancer, and are now survivors, who are in a position to provide feedback about their experiences and thus contribute to improving patient care and support.
This article was written on the basis of a presentation given at MASCC 2018 Conference, Vienna.
Financial support and sponsorship
This study was supported by Ontario Lung Association.
Conflicts of interest
There are no conflicts of interest.
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| Authors|| |
Margaret I. Fitch